A little scared


About 10 years ago I was diagnised with viral myelitis whereby I had inflammation in my CNS and had lost feel all round my body, i was lucky to recover eventually. About a year ago I started to get burning and stiffness in my hands when i became hot, increased pain in my back, shooting and sharp pains in my hands, arms and legs. Ive been back to my neurologist who says that MRI is clear of any new lesions, but my lumbar puncture showed positive oligoclonal bands, he said that my body is fighting off developing ms and diagnosed me with Inflammatory Demyelinating Central Nervous System with positive oligoclonal bands. My GP however is saying that i have ms but the neurologist is sitting on the fence with the diagnosis. I have had numerous tests and have had all sorts ruled out.

Im just so confused at the mo, i rang my neurologist as the pain intensified with the heat wave but he said that was normal with my condition. I havent a clue whether i have or have not got ms

Well, I’m not a doctor, but I think your neuro is an ass. “Fighting off developing MS”??!! If only it was that easy. Is it possible to find another neurologist, maybe with a referral from your GP?

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Hi Sunflower,

I haven’t had a complete diagnosis yet, although my nuro is more confident sounding than yours. If you’re in pain keep pushing them. My ophthalmologist told me not to be a martyr, apparently doctors don’t want to hear I’m fine, so I hit my nuro with a daily update sheet of everything I have had. Keep pushing. I keep getting told that the drugs really help so please don’t be scared, I know that’s easier said than done, but you no have support, on here and phone the helpline, they’re lovely and happy to talk through anything. Sending hugs.